CARERS TRUST – WRITTEN EVIDENCE (ASC0097)
About Carers Trust
Carers Trust is a national charity. Carers Trust works to transform the lives of unpaid carers across the UK.
We partner with our network of local carer organisations to provide funding and support, deliver innovative and evidence-based programmes and raise awareness & influence policy.
In 2020-21 we:
Carers Trust are submitting evidence because adult social care has a huge relevance and importance for unpaid carers, the services that support them, and people who need care and support.
What, in addition to the support that has already been pledged by the Government, would be the most effective thing that could be done to raise the profile, as well as to improve the identification and support of carers? What examples exist to demonstrate that better identifying and supporting of carers leads to better outcomes for those for whom they care?
Many carers do not identify with the word “carer”, nor do they necessarily need to – partly as carers may prefer, or be more likely, to use the word which describes the name of their relationship with the person they care for, such as “father” or “wife”; and partly as paid care support workers are often erroneously referred to as “carers”.
A key recommendation of Carers Trust is to help carers to understand the word, without requiring them to use it as a label. The word “carer” can be hugely helpful, it can open the door to support, entitlements, assessments and benefits.
A national awareness campaign, as part of a national carers strategy – around a simple question such as “Do you look after someone who couldn’t manage without your support?”, with a corresponding support offer from employers, schools, NHS, local authorities and the local voluntary sector, including carer support services, would be a huge help in communicating the importance of identification and support of carers to wider society. We have been informing work the DWP are exploring, connected to their Care Choices work. Similar campaigns exist in the NHS for other groups e.g. encouraging women to come forward for screening appointments, or South Asian men to look into their risk of diabetes. Carers Trust are part of a national awareness week, Carers Week, which while hugely influential, is not the same as a state campaign, nor can it come with a corresponding offer of support.
The government should make a tangible offer of support to unpaid carers. This should encompass:
Funding for carers support: We still welcome the legislation for carers in the form of the Care Act (2014), and we would like to emphasise our gratitude and acknowledgement of the role of many of the Committee members in forming it; it is good and robust for adult carers, young adult carers in transition, and parent carers in transition. However Carers Trust remain concerned that the rights for carers under the Care Act are not being met, due to the lack of sufficient funding provided to local authorities by central government. (While we appreciate that the Children and Families Act 2014 falls out of scope for this enquiry, we have similar concerns about this legislation). This is well documented from many sources, including the Association of Directors of Adult Social Services (ADASS), for example, who said in their last Budget Survey that “Government funding through the Adult Social Care Precept and Social Care Grant are insufficient to fund the costs of Demographic Pressures and the National Living Wage (NLW).”. Recent announcements of social care funding reform by the government do not address the funding issues for carers in their own right. We also have concerns that the government do not sufficiently monitor the implementation of legislation, including how many carers are identified and supported, in order to track progress and communicate the importance of these rights to the sector. The Short and Long Term Support (SALT) dataset is not sufficient, as it solely relies on the Adult Social Care Outcomes Framework (ASCOF) and should be reformed so that the SALT return captures all assessment and support activity for carers, including prevention. While it is an older piece of work, we commend to the Commission our own commission inquiry “Care Act for Carers: One Year On”, where we highlighted many of the issues with implementation of the Act.
The government must reform Carer’s Allowance: The level of this benefit should be increased and to be extended to more unpaid carers, to recognise the lost income and extra costs of caring. At present the system for claiming Carer’s Allowance is so restricted that more than half (51%) of unpaid carers responding to our Pushed to the Edge survey question on whether they were able to claim Carer’s Allowance said they were not. Government should therefore commit to a full reform of Carer’s Allowance, to better support people to care, including those in employment or education. This also includes addressing the overlapping benefit rule that disadvantages unpaid carers on state pension. The level of Carer’s Allowance should rise, recognising both the extra costs of caring, and the consequent loss of earnings or need to use savings. The eligibility criteria for Carer’s Allowance needs to be overhauled. For example, being able to claim Carer’s Allowance while studying, working, or receiving a pension, would also be both symbolic, but also practically helpful. Carer’s Allowance is not a luxury and should stop being a taxable benefit. Being in receipt of Carer’s Allowance should also entitle carers to free eye tests and dental checks, and free prescriptions. If implemented, these recommendations would all represent success factors that would help break down financial barriers for unpaid carers and tackle unpaid carer poverty.
How can carers who wish to do so be better enabled to stay in work or rejoin the workforce? What needs to change to achieve this?
A similar offer to that given to working parents needs to be put in place for working carers. While no one is suggesting it is easy to be a parent and do paid work outside the home, and discrimination against parents happens, all employers make an offer of support to parents, even if this is only through meeting statutory rights, with most making an enhanced offer.
Carers Trust were highly disappointed that planned measures to bring in an extra five days of unpaid leave for carers were seemingly shelved by not being announced in the Queen’s Speech this year, and similarly with the proposed day one right to flexible working.
Independent evaluation of Working for Carers – our programme which supports unpaid carers and former carers, aged 25 and over and living in London, to move closer to employment – shows that the holistic support provided by Carers Trust Network Partners is a factor in success. It also shows that:
The majority of unpaid carers accessing Working for Carers are classed as economically inactive when they enter the project. Of those unpaid carers who were unemployed on entry, a large proportion are classed as longterm unemployed. The project’s monitoring data demonstrates a gradual reduction in the number of participants stating that they were unemployed and a gradual year on year increase in the proportion stating that they were economically inactive since 2017.
While a change in caring responsibilities is commonly a trigger for an unpaid carer to consider moving into employment, evidence from the participant survey indicates that 91% reported that they were a current carer when they first accessed Working for Carers. This highlights some of the complexities and challenges facing unpaid carers who are having to balance their ongoing care responsibilities with potential future work or job searching commitments.
Finding job opportunities that fit around their caring role, such as flexible and part-time work, continues to be the most common barrier to accessing work, training or education reported by unpaid carers.
While key support needs of unpaid carers around employability skills and building confidence remain, the impact of the pandemic has led to a need for greater emotional support and help in addressing some of the wider and immediate challenges facing unpaid carers.
Around three in five carers who exit the project move into education, training, employment, or job searching.
As around one third (27%) of the unpaid carers who are supported by the Working for Carers project exit into employment, the growing body of research around supporting working carers, such as working with the employer to ensure that they have carer friendly policies, highlights a potential gap in current support.
What are the key priorities for carers in terms of their own support, wellbeing and resilience? How and where can these best be provided?
Our latest research, Pushed to the Edge, showed that carers’ top three priorities for what would make the most difference to their lives are more money, better support for the person they care for and a break from providing care.
Easier access to employment and reform of Carer’s Allowance, as already mentioned, would help with much of this. Reform of social care funding would have a dual impact of providing disabled people and older people with better support, as well as breaks for carers.
An annual health check for carers, including access to the flu vaccination, would be another tangible offer of support to carers.
To what extent do carers make use of alternative forms of support, such as the voluntary community? Is there any scope for them to draw on those assets more and how might they be enabled to do that? Are there examples where this happens successfully now?
Carers Trust works to transform the lives of unpaid carers across the UK. We partner with our network of local carer organisations to provide funding and support, deliver innovative and evidence-based programmes, raise awareness and influence policy. In 2020-21 we:
Reached 858,286 unpaid carers through our 123 Network Partners across 81% of all local authority areas
Directly supported 429,195 unpaid carers, including 54,362 young carers and young adult carers
Distributed £4,377,823 in grants to support unpaid carers
If social care funding was reformed, so that local carers services in our Network and beyond had more funding to reach more carers, this could be a transformational change.
The Committee has heard from our local Network Partners, as well as carers supported by the Network.
How valued and respected are carers in the overall adult social care system and what are the consequences of failing to value and respect them?
As we said in our Pushed to the Edge report, carers don’t need empty thank yous from government. Carers aren’t looking for pity or platitudes. They don’t feel the need to be admired, to inspire others or to be told “I don’t know how you do it”. While much lip service is paid to carers being “inspirational” or “heroes”, most carers don’t want these empty words, but want services and support that promotes their right to their own lives, and so that caring is a genuine choice.
Not having enough support doesn’t make carers feel valued or respected. Needing to go to foodbanks doesn’t make carers feel valued or respected.
Most unpaid carers find themselves in this role simply because they care for or love the person they support and are willing to help. Or because they can’t see any choice but to provide unpaid care. It can’t be right that, in return, they don’t get a break, even when that caring reaches over 50 hours a week, every week; that their mental and physical health is compromised; that they have to give up work or education or are pushed into financial hardship and poverty because quite literally they care.
What can be done to make sure that social care professionals recognise the expertise of carers and value them as full and equal partners in care, who are included as part of the whole team, so that there is greater synergy between paid and unpaid care?
Better initial training, as well as CPD, would encourage social care staff to do this, and we recognise the huge constraints and stresses they work under. It’s also important that local authorities and private social care providers offer their employees adequate support as carers. While social care staff should provide good support for carers regardless, if they are not being supported themselves this is harder to ask them to deliver.
While this approach of involvement is welcome, it is also important that carers’ boundaries and rights are respected and observed. Carers must have a genuine choice whether to care or not, including which parts of care they wish to take on - this is enshrined in the Care Act.
The Care Act deliberately places carers’ rights on a par with the rights of the person in need of care and support. This means that social care staff need to ensure that they are providing support to both carer and person with care needs equally. Whilst this may involve sensitive frontline practice work, for example, if a carer wants one thing and a person with care needs wants another, neither’s need trump the other’s need. Carers tend to put their own needs second, and this should not be taken advantage of by social care staff.
Confidentiality, GDPR and safeguarding should not be unnecessarily used as a barrier to involving carers, nor to receiving information from carers.
We have provided as an Appendix, further written evidence from Rohati Chapman, our Executive Director of Programmes and Impact, who gave expert oral evidence about our Triangle of Care programme. Whilst Triangle of Care is an intervention carried out in NHS Mental Health Trusts, its approach could be replicated in social care.
Why is the current care system so difficult to access for carers? What needs to be put in place so that carers can simply understand what is available to them as a right and discretion, and the person they support? Do you know of good practice examples? How can these examples be expanded more widely across the system?
The care system can be difficult to access, and much of this is down to funding constraints, as previously detailed. Many carers find themselves going from pillar to post trying to find the right support, and acting as unpaid care coordinators for themselves and the person they care for.
Carers Trust also have concerns that the advice and information duty under the Care Act is not being sufficiently met.
There is a wealth of information available, for example on Carers Trust’s website, but this relies on carers understanding the term and finding us, as detailed.
An offer of support from the government, as previously mentioned, encompassing health, social care, employment would help – with a digital page as a one stop shop for carers. All of Carers Trust Network Partners offer this service: advice, information, guidance and signposting.
The Committee has heard from our local Network Partners, as well as carers supported by the Network.
We are interested to see what will develop if local carer organisations are able to join provider collaboratives at ICS level, and if a similar approach to Triangle of Care were developed in social care, leading to enhanced or greater partnership working with health systems to develop integrated service models around areas like hospital discharge. For example, like that provided by Devon Carers.
We are exploring these in that context of greater integration and better commissioning that puts people at the heart. We want the voluntary and community sector- including local carers services – to be seen as equal partners in care with NHS and local authorities.
This supplementary information provides further information about the Triangle of Care programme, linked to our oral evidence provided to the Adult Social Care Committee on 16 May 2022.
Carers Trust works to transform the lives of unpaid carers. We partner with our network of local carer organisations to provide funding and support, deliver innovative and evidence-based programmes, and raise awareness & influence policy. We are positioned centrally to support local carer organisations delivering localised action, whilst also influencing the environment for unpaid carers UK-wide.
The original Triangle of Care guide was launched in July 2010 by The Princess Royal Trust for Carers (The Princess Royal Trust for Carers merged with Crossroads Care in 2012 to form Carers Trust) and the National Mental Health Development Unit. Whilst Triangle of Care has been mainly implemented in England so far, there has been some application and interest in Scotland and Wales. The Care Quality Commission references Triangle of Care in their Brief Guide (BG042): Assessing how well NHS mental health trusts support carers v2 Review date: August 2019.
Initially developed by unpaid carers, Triangle of Care is a practice model and a membership scheme to ensure NHS Mental Health Trust staff better support and engage unpaid carers of people using mental health services. Carers’ involvement in mental health care is not adequately supported. Their expert knowledge of how the person with mental health issues (when both well and unwell) is not sufficiently valued or incorporated in admission, care planning or discharge. In addition, staff too often do not inform or involve carers in the care of the person they care for.
The Triangle of Care is underpinned by six key standards, which provide better collaboration and partnership for the patient, carer and professional.
1 | Carers Identified | |
Carers and the essential role they play are identified quickly. | A carer’s, and patient’s, progress through the service is fully considered so that a carer is quickly identified, and their knowledge shared to inform treatment and support the patient. | |
2 | Staff are ‘carer aware’ | |
Staff are ‘carer aware’ and trained in carer engagement strategies. | Staff need to be aware of the valuable contributions carers can make and be mindful of carers’ own needs. They need knowledge, training, and support to become carer aware. | |
3 | Confidentiality | |
Policy and practice protocols re: confidentiality and information sharing, are in place across the care pathway. | Clear routine policies and mechanisms must be in place, including:
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4 | Roles and responsibility | |
Defined posts responsible for carers are in place. | There must be a carer lead or champion for all wards and teams, irrespective of service. | |
5 | Introduction to service | |
Conduct a carer introduction to the service and staff, with information shared across the care pathway. | This could be provided using an introductory letter, an appointment, a ward induction procedure, and information packs. | |
6 | Carer Support | |
A range of carer support is available. | Support can be accessed from several different services, including:
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The Triangle of Care scheme has 3 award levels (stars). For mental health trusts this award is up to two stars and for trusts that are integrated there is a third star. These stars are not ratings. NHS Trusts must self-assess themselves (reviewed by Carers Trust) and provide an annual report of their progress. This is crucial, as the Triangle of Care is never “done”.
The stars do not signify that member trusts are fully carer inclusive. They are awarded when the trust has demonstrated a commitment to becoming more carer inclusive, has shown honesty about where it is now and planned where it needs to be to ensure carers are better identified and supported.
In early 2019 Carers Trust commissioned McPin Foundation to conduct a lessons learnt review of implementation to date, from the perspective of unpaid carers, NHS staff, and wider key Triangle of Care stakeholders (including the national steering group). This provided a qualitative snapshot of the impact of Triangle of Care that has informed continuous improvement. A further outcomes evaluation will be commissioned in 2023.
Responses from within the NHS
Almost all the Trust respondents indicated that their Trust had a defined carer lead/champion (58 out of 62). Most said their Trust had a carers strategy (n=43 out of 63, eight unsure, 12 said ‘no’). The importance of the carers lead was recognised, helping to “drive the agenda forward”. Almost all (58 out of 62) said that carers were signposted to agencies outside of the Trust (for example, specific carer services, local councils and mental health charities).
Respondents indicated possible ways in which carers were involved in Trust processes, for example, input into meetings, feedback surveys, deciding priorities with local carer groups, monthly carers meetings, consultation led by carer’s lead. Most (48 out of 53) said that carers were involved in the design and delivery of Carer Awareness Training,
Impact of Triangle of Care
Of those NHS staff who answered the question relating to Triangle of Care (n=18), most said that it helped carers to be involved in developing services (n=15). It was considered to help conversations to take place with carers and help provide a framework for involving carers. One respondent said that Triangle of Care “made carers a priority alongside the patient” and helped identify ways in which they could be involved. One suggested that:
“The six standards gave a consistent, useful and meaningful framework that was shared by both carers and staff. The work to embed this across teams helped carers to have a stronger voice and be more visible in the organisation.”
Embedding Triangle of Care, facilitators and barriers
Survey respondents and interviewees were forthcoming about the challenges to implementing Triangle of Care. One of the main barriers to overcome was ‘NHS culture’, Triangle of Care being viewed as optional: “it can still be viewed as nice to do”. There was also potential resistance across Trusts, for example “this is the way we have always done it”. NHS respondents recognised that:
“It not the normal way of doing things and that takes a long time to shift that attitude and culture. It is slowly happening and needs to sustain the momentum”:
“Other things are a higher priority, e.g., CQC [Care Quality Commission] inspection or issue about staffing numbers to bed numbers” (Participant #5, Carers Lead, NHS Trust).
“The wards and crisis teams and the assessment hubs have been very welcoming, the wards particularly. They’re very interested, they’re asking what joined up work we could do together. When it comes to the Community Mental Health Team and it’s a different feel (not always), but I think, probably 60% have been fairly good and interested and 40% have been really quite tough” (Participant #9, Social Worker)
Respondents cited the importance of getting support from the right people; engaging carers and getting “buy-in from senior managers”, and that difficulties could arise when “middle management were not on board”. Management and leadership drives the process, and all staff need to commit to and understand Triangle of Care in order for it to work. NHS carers’ leads said:
“We have always got a director who is very interested and will promote Triangle of Care and backs us and the fact that they’ve made me, a post in its own right - for carers - shows that level of commitment to improving the lives of the carers. It’s essential you get top buy-in” (Participant #1, Carers Lead, NHS Trust)
Respondents suggested that understanding the complexity of work with carers took time. Staff turn-over creates problems in this regard:
“I do a lot of staff training and invest time in ensuring ward manager etc. is aware of Triangle of Care and the process. Often, when we come to review, they have left post and somebody new to get on board with it all again.”
Safeguarding was key;
“Not all carers are benign, and safeguarding issues for vulnerable adults also have to be factored in”. Staff often feared breaking confidentiality, and potentially losing professional registration as a result: “the complexity of issues around confidentiality in mental health are challenging for staff, who worry about getting things wrong”:
“The reason doctors are difficult about it is that they think they’re breaching confidentiality. […] a quick and easy way of getting out of having to have complicated discussions with people” (Participant #11, Carers Lead, NHS Trust)
Additionally, those charged with leading Triangle of Care and developing training may not be clinicians. This means that carers’ leads can find themselves isolated within the greater NHS system, unable to integrate into clinical systems and have as much influence as they might otherwise have. In order to embed Triangle of Care it needs to be followed up in clinical practice:
“I’m not ‘clinical’, I have no access to that system yet it’s my responsibility to train staff in carer awareness and […] say, ‘You need to record carer information’ but now we’ve changed systems and I don’t know what the new system looks like.” (Participant #5, Carers Lead, NHS Trust)
Responses from carers
Of the 28 carers in the sample, seven worked in the NHS, nine were otherwise involved with an NHS Trust (e.g., in a voluntary capacity), and three also worked for a carers’ organisation, 11 neither considered themselves to be affiliated with an NHS Trust or carer’s organisation.
Impact of Triangle of Care
Most carers (n=20) felt that Triangle of Care had helped carers get involved in developing services, four were unsure and three did not. One carer suggested that this question about developing services missed the point of Triangle of Care, which was to “create better engagement between carers and MH professionals by resolving obstacles to engagement”. Others suggested that the Triangle of Care had “made some staff more carer aware” or had given carers a voice to “enable services to be looked at and improved.”
“There is a trend - towards greater recognition of what the carer can contribute. (Participant #6, carer)
“Professionals don’t know how to listen, they need to do active listening in that you don’t judge a person while you are listening to them, you give them time to talk because sometimes you struggle for words.” (Participant #3, Carer)
Despite the importance of carer involvement, it can be difficult to involve active carers, perhaps due to caring responsibilities taking priority. This was mentioned by carers and staff:
“We now include carers in the training but if they’re actively caring, it doesn’t always work out, sometimes, at the last minute, it may be cancelled due to caring responsibilities” (Participant #9, Social Worker)
Embedding Triangle of Care, facilitators and barriers
Carers corroborated what the NHS respondents said when talking about the barriers to implementation; lack of resources, lack of leadership, confidentiality, and the complexity of working with carers in mental health:
“Sufficient funding to achieve the above. Failure of leadership in driving implementation. Failure of ownership which needs to be spread throughout the organisation.” (Carer, survey respondent)
“In each area, need a full-time person who does Triangle of Care - promoting it, making sure it happens. Needs to be funded to keep it at the forefront. Lucky - in our Trust - our Director of Nursing is very pro-Triangle of Care and drives it.” (Participant #2, Carer)
“In mental health there are complex issues and again training on confidentiality can be seen as complex rather than common sense.” (Carer, survey respondent)
“It’s not easy [Triangle of Care] because there’s a lot of trust involved. You’ve got to talk to a patient or carer in a way that’s not comfortable for some professionals…You need to be brave enough to say, ‘Sorry, I don’t know anything about that, but I’ll find out’”. (Participant #3, Carer)
Echoing what NHS staff had said, Triangle of Care appears to be more difficult in community settings than in ward settings:
“It’s more difficult to use Triangle of Care in community settings as carers are much more fragmented and services work one-to-one […] the whole service user cohort is fragmented”. (Participant #7, Carer)
Responses from carers’ organisations
There were 14 responses from people working for carers’ organisations, three of whom were carers and three of whom indicated that they were also involved with the NHS in some capacity. Most of these participants agreed that Triangle of Care had helped carers be involved in developing the service (n=10), one disagreed and three were unsure.
“I think it is the same few carers all the time. Carers who are perhaps already working with Trusts. It seems to me that Carers who are not involved with Trusts are still not being given information by wards or mental health teams.” (Carers organisation, survey respondent)
“It has helped mental health trusts to structure their work around identification and support of carers. However, I do think this has been focused primarily on adult carers, and there is still a lot of work to do around embedding the Triangle of Care principles for young carers” (Carers organisation, survey respondent)
Please note that the Handbook and a number of core materials, including Guide for Carers and Guide for Providers, is in the process of being updated and will be published in summer 2022.
There is an Implementation Toolkit to help providers, which sits alongside the guide itself: The Triangle of Care, Carers Included: A Guide to Best Practice in Mental Health Care in England.
As a requirement of membership, mental health providers must have carer partners who will act as critical friends to the process. Carers Trust has developed guidance to support carers and carer organisations to act as critical friends and the process to be as successful and positive as possible - The Triangle of Care Toolkit – A Resource for Carers and Carer Organisations to Act as Critical Friends. Many Carers Trust Network Partners provide this role, and/or may involve carers they support in this process, as do other local voluntary sector partners. Carers Trust Network Partners are not funded by Carers Trust to provide this, but they may receive funding to do this as part of their commissioned services.
Carers Trust remain separate from the NHS complaints procedure and CQC oversight. While Carers Trust cannot investigate a complaint relating to a Trust who a carer believes has not complied with Triangle of Care, we have in the past had informal conversations with Trusts. We would also offer signposting and initial support to carers, signposting them to local Network Partner (or carers service), local Healthwatch and the NHS complaints procedure.
There are also three supplementary guides which complement the Triangle of Care:
This is for staff supporting parent carers, and sibling carers (young carers and young adult carers), of children who use children and young people’s mental health services Funded by NHS England. (2020)
27 May 2022